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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by quick shocks, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute therapy only. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a